For healthcare professionals

We provide two separate but related services: the Highly Specialised Service (HSS) for rare neuromuscular disorders and a regional neuromuscular clinic.

Please see below for which patients are suitable and the referral pathways for each of these.

Highly Specialised Service for rare neuromuscular disorders
NHS Regional neuromuscular clinic

The Highly Specialised Service for rare neuromuscular disorders
what services do we offer?

The Highly specialised service for rare neuromuscular disorders accepts referrals for the following patients:

Patients can be referred to the HSS for the following:

How to refer to the HSS and what criteria are for referral (links to forms)

We’d love to hear from you! (LINK FOR GOOGLE FORM)

At your clinic appointment you will meet one of our specialist neuromuscular physiotherapists who are specifically trained to assess neuromuscular condition and provide advice on their management. All physiotherapists have access to a senior member of staff to discuss any concerns, next steps, and management. Their role is to help you better manage the limitations of your muscle disease and minimize its impact on your daily life through direct contact with you and working with your local team.

You may meet our careadvisor: INSERT PREVIOUS TEXT (a lot of text!)

You may meet our specialist nurse: INSERT PREVIOUS TEXT (a lot of text!)

At your clinic appointment you will meet one of our medical doctors or consultants. Our consultants, Prof Chiara Marini-Bettolo, Prof Michela Guglieri, Prof Volker Straub, Prof Jordi Diaz Manera, Professor Giogio Tasca, Dr Maha El Seed and Dr Lizzie Harris, are specialised in inherited neuromuscular diseases but each with specific areas of expertise and interest.

We have a number of Trust doctors and doctors in training or clinical fellows in the team who you may meet at your appointment. Many of these doctors are on their way to becoming neuromuscular specialists in their own right, and will become the experts of the future, but we appreciate that seeing different members of the clinical team may not be the preferred approach for some patients. All doctors have access to a senior member of staff to discuss any concerns, next steps and management, and although you may find yourself meeting different team members at different appointments be assured that there is regular discussion of diagnostic investigations and management concerns amongst the whole team.

For healthcare professionals

The Highly Specialised Service for rare neuromuscular disorderswhat services do we offer?

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The Highly Specialised Service for rare neuromuscular disorders
what services do we offer?